Still Doing Good!

There is not a whole lot to report. I am doing good and nothing much seems to be changing. I don't get to go very many places with all the H1N1 going around right now. So, I spend a lot of time with my Grandmas and I am starting to get pretty rotten! But, I feel great! I can run and jump and play with the best of them.

Thank you for your prayers. Please continue to pray for me that my body will continue to heal and that they can taper more of my medicines in December. Thank you again for everything!

Kya Kay

I am 3 Today!

Today I am 3 years old! Last night I slept in my new bed for the first time. I even stayed in there all night because I am a big girl! (and because every time I hollared mom came running) I am so excited about my big girl room and all of my new things in it. I have spent a lot of time in my room playing and watching my movies since they redid it Saturday. I still just wish it was pink! Maybe, Santa will do that for me.

Thank you for your prayers. I am feeling much better and I am so glad I don't have to take yucky shots or treatments anymore! What a great start for my third year. I have even learned how to give myself my own medicine. Mommy just gives me the syringes and I do the rest by myself. (such a drastic change from her holding me tight while I kicked and screamed when we started) We have all grown a lot since January 7th.

It is hard to believe this time last year I was taking my 2 year pictures without a care in the world. We can never imagine where life will take us or how quickly it will take us there! I have had to grow up a lot this year and learn to be a big girl. (although, I have my moments)

Thank you again for your prayers and help. I love getting mail and the cards that you send me I love to keep! Please continue to pray that I get well. I still have to take lots of medicine and can't hang out with friends and play like all the other kids! I am praying that next year on my birthday I might could be off all my medicine!

I hope to see you around soon!

Kya Kay

Kya's 3rd Birthday Party

Well, the swine flu is gone and today was the day to party! We had a family birthday party for Kya's 3rd Birthday at the house today! It was small but fun. And since we were having this party today my best friend and I scrubbed my entire house yesterday to get rid of all the germs! We used 2 gallons of bleach and lots of lysol. Hopefully nothing survived our attack!

Kya got a big girl bed for her birthday. She also got several other fun things! She was very excited to see her family and to be back at her own house with her own things! Here are a few pictures from todays events!

Here is the cake that my mom made for Kya. It is awesome and all of the princesses were there!

Here is her cook outfit that she got for her birthday! Kya loves to cook!

She is a beautiful fairy princess!

She is very tired. She had a warm bath and is ready to go to bed!!!

Thank you so much for all of your prayers! Please continue to pray for healing in Kya and that we avoid the swine flu. She got her H1N1 vaccination Friday, but it still won't guarantee protection! We appreciate all of the prayers and support!

Kalee

Flu Update!

Kaysa is feeling better. She is no longer chilling, no headache, no bodyaches, no fever! She still has a slightly sore throat and a bad cough. But, her energy is back and she is acting much more lively! Lake gave her Tylenol at 5:00 p.m. and we are going to see if she can make it the next 24 hours without it and with no fever. Hopefully, we caught it quick enough. By God's grace we had the Tamiflu down her within 2-3 hours of the first sign of a symptom! They told us that would make a huge difference. Also, Lake (bless his heart) gave her Tylenol faithfully every 4 hours all night long and for 24 hours straight! He is such a great daddy!

Kya is currently showing no signs or symptoms!!! Please continue to pray that she stays very healthy and strong! Also, pray for continued healing in Kaysa and that Lake and I do not get this. We are suppose to have a very small Birthday Party for Kya Sunday afternoon! Please let everyone be well!!! Thank you for all your prayers!

Kalee

Swine Flu has found our house!

A quick update to ask for your prayers. Kaysa, our oldest, has swine flu. Kya is not showing any symptoms currently, but her and I are staying with mom and dad. Kaysa and Lake are at home trying to get well. Kaysa and Kya are both on Tamaflu and Lake and I have a prescription in case we start to get sick!

Please pray for healing in Kaysa and that Kya does not get it!!! Thank you so much for all of your prayers and continued support!

Kalee

Doing Good!

Kya had an appointment at Oklahoma City with Dr. O'Neill. She said she was doing very good. Kya was not real cooperative in doing the muscle testing, but every two year old has their day! She would do a trick for about 45 seconds and then say "I'm all done!". It is very frustrating trying to get a two year old to do something they don't want to do! However, Dr. O'Neill says that is just a two year old and don't worry about it. She was amazed at how busy and strong Kya was. She said she was getting tired just watching her and I totally understand that feeling.

We will go back to Chicago in December. Until then, we just wait. I hope we are waiting for nothing, but we are watching for everything. Any signs of rash, muscle loss, fatigue, illness. I don't like this game! We don't see a doctor or have any blood work again until December. Exciting and scary at the same time!

Strength wise Kya is doing good. Still a little weak in the abdomen, but getting stronger. However, her immune system is still very suppressed!!! She told us to be very careful getting her out and about. So, we are thinking about becoming hermits. Not really, but we are trying to be very careful. We are trying to avoid sick people, large crowds, enclosed areas with lots of people, and public places in general with Kya. No daycare, no nursery, nothing with other contact with kids. It is not much fun for her, but at least she has Bubbles!!! I am ready for this flu season to be gone and over!

Thank you so much for your many prayers! Kya is truly a miracle and w know that God is curing her as we speak! Please continue to pray for our family and that we can all stay healthy and strong. Thank you again for everything!

Kalee

We are Normal!!!

They called from Chicago yesterday and said that all of Kya's labs came back perfectly normal!!! Her aldolase was 5.1 right in the center and everything else was in the normal ranges also. We are so excited that she is responding so well!

So what does this mean? Many people have asked if she is in remission and the answer is NO. She is responding to medicine and is medically stabilized. She is no longer on infusions, steroids, or methotrexate. (yeah!) But, she is still on cellcept and plaquenil which are very strong immunosupressants. She also takes about 6 other meds and vitamins a day. She is doing well right now and right now the plan is to hold where we are until December. If she is still maintaining in December they plan to start tapering her cellcept. This tapering process will be slow and closely monitored. They will try to make sure that she does not have a flare as we taper. This is the hard part and the very carefully managed part. Too fast and she could flare which would make us have to start all over. If she gets sick, she could flare and we would have to start all over. Just a little stressful for mom and dad trying to decide how to keep life "normal" and be smart about exposing ourselves and Kya to all the risks. But, we know that God is going to take care of her and she is going to be just fine!

When will she be in remission? Who knows! She will not be considered "in remission" until she is off of all medications and all of her levels are normalized without medications. This could be soon after tapering or this could be never. Some kid do very well on medicines, but they just don't handle the tapering very well. She could get completely tapered off and pick up a bug and go into another flare. She could get completely tapered and this ugly disease never show its face again! Each child is different and it is about a 33% chance for any of the above to happen. We are praying that God will just cure her of this and we never have to worry about it again! That is what Kaysa says is going to happen and anyone who knows Kaysa knows that she has a tight connection with God!

Thank you so much for all of the prayers and support! It has been an amazing journey so far. I have made many new friends and have grown closer to people I never imagined I would. We have grown closer as a family, as christians, and as friends! I appreciate our prayer warriors and I beg you to continue to pray without ceasing! You are seeing a miracle in Kya's life. Thank you!

Kalee